CSN Login
Members Online: 7

You are here

Xeliri-hair loss-cramps

Brenda3.16
Posts: 211
Joined: May 2009

I just had my second treatment of Xeliri on Friday. I have lost almost all of my hair. I had thinning on Folfox. This has been really hard to deal with. It looked so bad today that I couldn't go to work. I teach 7th grade. I have a wig ordered and it will be here in a couple of days. I know the hair loss should not be a big deal,but it has been much harder to deal with than I thought it would be. My 15 year old daughter looked really upset as she looked at it this morning.

My first treatment of Xeliri with Avastin was hard. I threw up in the car on the way home. The second one was better because they adjusted the anti nauseau meds. I am having a lot of stomach cramping a few days after. Sharp cramps that last for a few seconds then pass. Any body have any ideas how to deal with this ?

My last scan was in Sept and it showed growth in the liver and lungs and that is why I had to start Xeliri. I had been on Xeolda and Avastin for a year and felt great on that.

I don't post a lot, but I do lurk and you all mean a lot to me.

I am feeling really sad about my hair today,but I'm sure it will pass.

Brenda

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I was surprised how difficult losing my hair was as well. It does get better, you get used to the look, although I never did like it. The first time I did wigs, the second and third times I just knitted and crocheted a bunch of hats and used those mostly. They have hair pieces you can buy as well to wear under the hats which are more comfortable than a full wig. Of course, with winter coming up, the wig will keep your head warm! Make sure you get a nice soft hat to wear at night, you will be surprised how cold your head will get! As far as the stomach cramping, tell your nurse next time you go in, they'll have something to give you and I THINK it's atropine, but I don't remember. Sandostatin is a once a month shot that helps tremendously as well; do you get diarrhea with the cramps? I pray you get to feeling better soon!
mary

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Your right, Mary

Atropine will help the cramps.

-c

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Mary. I am home alone today feeling sorry for myself, but I will snap out of it soon. I plan to go back to work as soon as my wig comes in. I feel better when I am occupied.

Are you currently on Folfori ?

Today I have cramps but no diarrhea. Last cycle I got cramps with and without diarrhea. The diarrhea was easily controlled with imodium.

Thanks for the encouraging words.

Brenda

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

l agree ask for a shot (or two) of atropine while infusion and you feel much better the whole week!.
Have the bast!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Almost the same as XELIRI - just 5-FU instead of Xeloda. I'm also on Avastin.

I lost about 9/10 of my hair on FOLFOX. FOLFOX was a complete nightmare for me. While FOLFIRI w/Avastin first round wasn't a picnic, for me I'd take it over FOLFOX any day. It did really wipe out my white count though - I had an extra week off due to personal scheduling, and then even with 3 weeks since the last cycle my white counts were too low to get my 2nd tx last Thursday. I'm hoping to get it this week.

I have lost about 2/3 of my hair already, it didn't take a second cycle to make that happen - around day 15 or so it started falling out heavily. I don't expect to have hair left by the end of the month. But I'm ok with that. Compared to the rest of the crap I've been through, losing my hair is minimal. I'm sure at some point or some days it will bother me more, but so far not so much. And to think my first worries when I was told I needed chemo were about not being able to travel to my home in Mexico and losing my hair. I wasn't concerned with anything else. I had long hair my entire life - until a month ago when I got it cut short (because even though my hair was growing back nicely after FOLFOX, I had so little long hair left that it was silly - I had a tiny ponytail or bun). Now that I've gotten through a short hair cut, I'm ready for it to all fall out.

I got BAD stomach pains first tx. Not really cramps, but awful pain that lasted anywhere from 30 seconds to an hour. I'm debating about trying the shots to help with this on infusion day, but it also is to stop the diarrhea. I was very constipated the first week, so I'm afraid that might make it even worse. I got bad diarrhea that I couldn't control with Imodium the second week. But Lomatil was a miracle drug for me - one little pill and that was the end of the diarrhea.

The good news - after just ONE tx of FOLFIRI w/Avastin, my CEA was cut in half from 12 to 5.7! I hope you get good results like this too! Then it makes it all worth it - hair loss, stomach cramps - a small price to pay if it kills the cancer.

I hope your wig comes soon, so you can feel more comfortable. I have one that a friend sent me. I look good in hats (awful in glasses), so I'm looking forward to maybe having a little fun with hats or scarves too. Change is scary, but often it can turn out to be fun. A breast cancer survivor told me about a wig shop near me that has cheap synthetic wigs for around $30. She'd buy one and wear it for a month, then toss it and get another. Now that I know what I look like with short hair, and will soon know what I look like with a bald head, it might be fun to find out what I'd look like as a redhead or brunette too!

My son who just turned 16 is impatient for my hair to completely fall out. He wants me to shave it now - because he is shaving his with me. I told him I want to hang on to it as long as I can, but we'll be shaving soon. And he's thinking of asking the entire sophomore basketball team to shave their heads too. A few of them keep it quite short like my son, so it wouldn't be a big deal. But a few have longer hair and it would be a big sacrifice. Some of the sophomores will make the JV team this year (maybe my son too), so we might even get the JV team to shave. If that happens, I wouldn't be surprised to see the freshman and varsity do it too! Now that could be fun! I don't expect my two daughters (21 and 24) to shave their heads. The oldest cut off her very long thick hair for me last year in case I lost mine. But the only person I found to make it into a wig wanted $500 (telling me that is half price). We don't have that kind of money for me to spend on a wig. Too bad, as her hair is just like mine was in my 20's. It would take me back a few years! I'm still looking for a way to get it done cheaper. A year later she has long hair again - 1/2 way down her back. My other daughter has very long thick hair too, and has never had hair shorter than a little past her shoulders. My son who is a freshman in college probably won't shave his - he knows his years of having hair are very limited due to looking at my father, uncles, brother, and his father. Right now he still has very thick curly hair that he likes.

While your 15-yr-old daughter might be a little shocked now, this is a good lesson for her. She can see that looks (hairstyle and whatever else) really do NOT make the person. You are you, with or without hair. And having mom still here with her without hair is a heck of a lot better than the alternative!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brenda,

I've been wondering about how you've been doing, so glad to see your post. I'm sorry you're having such a time with feeling sick, but glad they got the antinausea meds under control. I had a tough time myself when I was on Folfiri- the irinotecan caused nausea worse and worse each time & nothing I took did the trick & I got to the point where I was throwing up each time. I actually got to the point of getting my medical mj card and went to a dispensary and bought muffins baked with mj (I couldn't ever bring myself to just buy the regular stuff and smoke it). Anyhow, I did this just once and then I ended up stopping the folfiri (that's when I went on Dr. Cantrell's treatment... won't go into that :~). Anyhow, the mj did help, but it made me so sleepy that I didn't like it at all & was disappointed cuz I thought I'd get more out of it, after all I had heard. Maybe I would have if I had smoked it. Shortly thereafter, the feds shut the local dispensary down saying they were too close to a school (it was really just harrassment, as Calif has med. mj legalized, but they always get hassled and shut down for inane reasons).
There is a patch for antinausea out too now- ask about that if you haven't already tried it. I think it may be called Sancuso- something like that.

Sorry about the hair- hope your wig comes soon. I know how self conscious you probably feel around your middle school students- such a dopey age- some will be sympathetic & some will talk. I know my 14 yr old told me that she'd be embarrased if I came around her friends if I lost my hair. Such a selfish teenagish thing to think and say. I know she felt bad after she said that to me, but apparently that is how she feels. My 10 yr old was mad that her sister feels that way and said that. My hair was thinning a lot lately and is in pretty bad shape, but did just stop thinning and seems to be growing back (a 1/2 inch fuzz is growing on much of my head among the rest of the hair still there- it's still quite thick on top and in front, but is very sparse from my temples down and at the back nape of my neck area, so the part that normally is long is almost nonexistent and the top and front is poofy and too thick and looks weird that part has also become curly and frizzy- something I never had before. I just got it cut again to make it look more normal, but it really still doesn't.
In some ways, I have heard, losing your hair (while devastating) can actually be somewhat liberating once you get going with it- much less time needed getting ready in the mornings (so my friend tells me who recently lost her hair).

I admire your strength for still continuing to teach during chemo. I miss my teaching days, but still have so many bowel issues and days where I feel like I'm going to faint, that I don't know how I ever could do it. I hope and pray you don't struggle with all those issues while teaching. Do you have someone on staff on notice in case you need to ever run out of the classroom while the kids are there?

Take care, Brenda, and I will be praying for you for the chemo to do its job and for your strength, energy, healing, and for clarity of mind and positive emotions while teaching and in life, in general. Also am praying for your daughter, as I know firsthand how hard it can be on our kids and sometimes how hard it can be in dealing with our kids!

Hugs,
Lisa

C Dixon
Posts: 202
Joined: Jan 2010

My doc gave me Levsin for the cramps and it works. They were very sporadic for me but boy did they take my breath away when they paid a visit. Ask your doc for that and carry it with you whereever you go.

Catherine

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

definitely works for the intestinal cramps, never thought of it for stomach cramps. It works like a champ for intestinal cramps, when the diarrhea gets really bad and lomotil just isn't cutting it!
mary

Brenda3.16
Posts: 211
Joined: May 2009

Thanks everybody. You are all the best. I know the hair loss isn't important and the main thing is that this chemo will attack the cancer.

Is the Levsin recommended for cramps that are not accompained by diarrhea ? I have had cramps on and off all day today. They are strong and usually last for 10-15 seconds then stop, but I have not had an diarrhea yet this cycle.

I don't have a great appetite either. Thanks for all the encoraging words. You are all the best. It is great to hear from everyone.

I have been home all day feeling sorry for myself.

Brenda

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry you are having trouble with Xeliri. I am glad they are figuring out the anti-nausea meds. With regards to the hair loss, you may find that just as you are getting used to the loss, it starts growing back in. That is what happened to me. I lost most of my hair, had my daughter cut the rest very short, + low + behold it started growing in. It is now a not-bad length though still short. My hair was always soft, but now it is super soft. People love touching it - my kids, husband, Mom + even a few men in the neighbourhood. I decided to have fun with it. My kids have been totally okay with it - I tried to show them I was okay with it + I think it has worked. We make jokes all the time about it. Yes it is annoying to lose it but having fun with it has really helped me. I have a beautiful wig, which I have never worn. Somehow I felt more comfortable with hats + scarves. And surprisingly, although I am challenged when it comes to hair, scarves, etc, I received compliments from complete strangers on how nice my scarves looked. I wore nice bright colours. For months now I haven't worn anything on my head. Even my 4 + 6 year old nieces were more curious than anything when they first saw me with almost no hair. The 4 year old once said to me "Remember last year when you had long hair?" I said, "Yeah, I remember". Kids are really accepting,they just need to know you are okay with it.

taraHK
Posts: 1961
Joined: Aug 2003

Hi Brenda - sorry for the slow reply. I have had those cramps, too. Sometimes they proceed diarrhea but sometimes unrelated. My oncologist refers to it as "colic". He gave me some pills for it (can't remember the name -- will check and send). Funnily enough, since he gave me the pills, I haven't needed them! My colic was only bad enough to need medicine for one cycle -- not so bad now. I hope this is the case for you, too!

Glad your anti-nausea meds got adjusted. I have mild-moderate nausea for several days but I don't throw up.

I'm having a hard time about hair as well. To my surprise, mine has lasted longer than I thought (I have finished 9 cycles of Xelir). But, I think the time has come....probably this weekend I'll cut/shave it off. I've been trying on scarves and wigs....I'm going to go for dramatic earrings, more makeup -- that's the plan, anyway!

Tara

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Yesterday I got Atropine 1/2 way through the Irinotecan infusion. It helped a lot with my stomach pain. It also helped with the nausea and severe salivation I was having. This cycle has been much harder than the first for me. About 1/2 way through the drug, my head felt like it was swelling and would explode, I started severe stomach pains, and awful salivation. The Atropine helped it all. It made my mouth so dry I couldn't swallow for a while because there was nothing to swallow. At first I kind of freaked out - it was that severely dry. But I prefer that to the constant swallowing (and drooling when I sleep), and the nausea it causes, and the gas and belching it causes.

Ask for Atropine with your next infusion. It is supposed to help with the diarrhea and cramping some people get on infusion day. They told me that even though I don't get the diarrhea till much later in the cycle, and I describe my pain as pains, not necessarily cramping, it is all related, and the Atropine helps.

I am going to call today to see if there is anything I can take at home to help with the stomach pain and the excess saliva. (I remember the saliva issue from my pregancies with severe hyperemisis - I'd forgotten how awful that was until now.)

I hope your third tx goes better for you.

taraHK
Posts: 1961
Joined: Aug 2003

I get that very dry mouth as well. Hadn't tied it to the Atropine but that makes sense. I get 2 atropine shots during my infusion (one at begiinning one at the very end). I have found the dry mouth a little scary at first -- worried my throat was swelling or something. But I'm OK with it now (sip of water helps ha ha). I haven't experienced that excess saliva so sorry I can't help with that.
Tara

Brenda3.16
Posts: 211
Joined: May 2009

For my second xeliri treatment my Dr added Atropine infusion at the beginning and Emend infusion at beginning, then Emend pills for 2 days post chemo. It went much better. I didn't vomit at all. I felt a little nauseous in the car on the way home, but felt pretty good on Sat and Sun.

I had to go back to Dr this week for blood work because wbc count was a little low. I complained to Onc about pains in stomach. They sent me for a scan, which showed a little inflamation in colon. They felt it could be colitis. They gave me an antibiotic for 10 days.

I am dealing much better with hair loss. Got a good wig. Went to work on Fri. 7th grade kids didn't seem to notice or care about the wig. They just wanted to complain to me about how much they didn't like the substitue that was in for me and tell me everything that she did differtly than I normally do. They are very funny.

I am going to ask my Onc next week if levsin might be an option to ease cramps.

I have had almost no diarhea this time. My appetite still is not at all normal. After the first tx, I lost 7lbs. I have been drinking ensure this week, which is actually pretty good.

Thanks for all the support.

Brenda

AnneCan
Posts: 3692
Joined: Oct 2009

Brenda,

It sounds like things are better; I am so glad. Kids are funny - they probably didn't even notice the wig, they can be pretty self-centered.

Anonymous user (not verified)

This comment has been removed by the Moderator

Brenda3.16
Posts: 211
Joined: May 2009

Hi Kathy,

My Xeloda dosage is 3000mg. I take 1500mg twice a day for 7 days , then no xeloda for 7 days.

My doctor added Emend for my 2nd treatment and that really helped a lot .

I get my infusion every other week. Do you know why you get it every 3 weeks instead of every 2 weeks ? My Onc acted like it was standard to do every 2 weeks.

What alternative treatments are you trying. I have been doing accupuncture, and my accupuncturists has given me some chinese supplements to take. My ONC is not really open to the supplements. I have to take them without his knowledge.

I am getting used to the hairloss very quickly. I have surprised myself. Lets hope this treatment has great results for both of us !

Brenda

Anonymous user (not verified)

This comment has been removed by the Moderator

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Standard protocol for Xeloda is 2 weeks on and one week off. Standard for 5-FU is bi-weekly for 46 hours. They match up the other drugs (oxaliplatin or irinotecan, Avastin, etc.) to the cycle of the base drug.

I'm on 2-week cycles for FOLFIRI w/Avastin. Everyone else I know on Xeliri w/Avastin is on 3-week cycles.

Every oncologist has a reason for chosing what they do. Ask yours and I'm sure he'll tell you why he thinks a 2-week cycle is good for you for Xeliri.

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Kathryn, I will be asking my Onc this week about my 2-week cycle. I just assumed that it was standard because he never mentioned any option of different schedules.

Subscribe to Comments for "Xeliri-hair loss-cramps"